Out of sight, out of mind? a review of data available on the health of care home residents in longitudinal and nationally representative cross-sectional studies in the UK and Ireland

Abstract

Background: care home residents are aged, many have multiple co-morbidities and low levels of functioning. Yet, the UK has no routinely available, national data on health in care homes. The aim of this study is to identify longitudinal or nationally representative cross-sectional sources of information on the health and wellbeing of older adults residing in care homes in the UK and Ireland.

Methods: searches were made of health databases (Medline, Embase), websites of the Economic and Social Data Service and UK Office for National Statistics, and selected journals. On-going longitudinal or repeated cross-sectional studies were sought in the UK and Ireland, that included participants aged over 65 and reported one or more health-related variables. Data were extracted on studies that included older adults in care homes. If necessary, study teams were contacted for information.

Results: we identified 42 longitudinal cohort or repeated cross-sectional studies in the UK that involved older adults. Of these, 17 studies provided data from care home residents. The time period of data collection ranged from 2 to 40 years. Proxy interviews were used to capture the majority of data in care homes.

Conclusion: in the UK and Ireland, most longitudinal and nationally representative cross-sectional studies do not include or follow-up older adults in care homes. Systematic data collection on the health of older adults in care homes should be a priority, to inform policy development and enable monitoring of care delivery and health outcomes.

Keywords: aged; cohort studies; longitudinal studies; nursing home; older people.